January 2016 Update
It has been a long time since our last update, and we apologize!
Unfortunately, it’s been rough lately, with Peyton really having a hard time after the surgery last year, and with increasing problems trying to control the seizures. We’ve been on several different medications, but still having difficulty keeping them under control. He’s been through a lot of Physical Therapy and Occupational Therapy trying to regain his strength and speech/swallow back since the surgery last year.
But, through it all Peyton remains upbeat and positive, and never, ever complains. He just perseveres, and keeps smiling and laughing at people’s funny stories. He really enjoys his new school, which is a transitions class that teaches “life lessons” and how to be more independent. And, he is very excited that the Broncos and Peyton Manning are in the Super Bowl!!
Kayla continues to do very well, and is getting good grades, singing in several choirs, acting, and playing the violin. The Cyclodextrin drug is definitely helping her! The Phase 2/3 Trial for the drug has now begun, and hopefully will be finished within a year. Another bit of good news is the FDA has agreed to “fast track” the approval process once the trial is finished, so if the results are good, the drug can be approved sooner, and many more NPC patients will have access to the drug!
The hearing problems related to the drug are still our main focus on the research end, and Hadley Hope is helping fund several studies to get this problem solved. We are also still exploring other drugs and therapies that can benefit all NPC patients!
Thank you to everyone for your cards, emails, and wishes during the holiday season, we sincerely appreciate the support!
PLEASE NOTE: Our Mailing address has changed, so please update the mailing address for Hadley Hope.
You can send to:
PO BOX 8420
Medford, OR 97501
Our sincere prayers go to everyone for a happy and healthy 2016!
Bryan and Laura